The Backstory on My Back


acc HELPHi, I’m ACC 18 Number 201905123684, I’ve swapped the numbers a little, although it probably doesn’t make any difference. I’m fairly well known.

My back story consists largely of digital files and probably a few manila folders and other storage media in several Accident Compensation Commission, medical, physio, specialist, hospital, surgeon, Occupational Therapist, Pain Specialist offices around New Zealand. They get shuffled from time to time.

Having said that, everyone on my journey has been friendly, thoughtful and most have tried to help me. A few, who I haven’t met, somewhere in the system have the job of helping ACC to not have to pay for my surgery, with considered justification. I’ll talk about that too.

Blackroom Relay for Life 2016 Print-47In March 2018, I hurt my back getting ready to set up for the Auckland Cancer Society’s North Shore Relay for Life event. The annual 18-hour relay, raising funds for cancer services which I have completed 6 times. I started with my family in honor of family members who have died from cancer, including my late father-in-law.

Then I got cancer myself, and during the fund-raising process I’m proud to say that over 30 men got tested for Prostate cancer because of my story, but I’m getting ahead of myself. I was given the honour of speaking at the opening, having refreshments in the survivors’ tent and carrying one of the flags in the first survivors’ lap. A humbling and emotional experience.

20170325_155154Trying, unsuccessfully, to awkwardly pick up a bag of tent poles out of a trailer provided at the venue by the organizers, for a 4 room tent, would set off a chain of events that has opened my eyes to the plight of many New Zealanders, who desperately want to work, but can’t, because the health system is underfunded, under resourced and inefficient.I became one of them.

I have a job. I hold a management role at the NZTA, a job I love with an awesome team of people who provide mostly Real Time Travel Information to motorists and travelers around the country.

It’s been 14 months since my injury.

My Occupational Therapist, GP, Pain Specialist and my Manager have agreed that I can work 2 three-hour days a week. ACC funds taxis to get me there as I could be a danger to myself and others, under the daily pain medication regime I’m on. That allows me to do something productive as well as socialize with my colleagues and not feel totally divorced from my work.

It was part of my back to work program, which has stalled since the Orthopedic Surgeon advised me that we had ‘painted our backs into a corner, having tried every alternative to fusion and discectomy surgery.’

I am incredibly grateful that the NZTA hasn’t dropped me under the bus and that I still have a job, although I am not currently able to perform my normal duties.

Over the next while, along with other activities, I’m going to talk about my life, one shared with my family and friends, colleagues and the health system.

I’m going to talk about what happened, about why I still can’t go back to work, why I am still waiting for surgery after 14 months. How ACC don’t want to pay for the surgery, how I can’t afford to pay for the excess if I went private, and my current experience with the Auckland District Health Board and North Shore Hospital, where I was referred as an Urgent Patient on the 9th of April.

I have not yet been able to connect with the person who makes appointments. When I rang them at the end of April, the hospital representative at the Patient Service Centre said they must see me within 4 months, and it was too early to ring. I was told it wasn’t worth ringing before the end of May and even then, not to get my hopes up. I rang today and left a message on their voicemail.

I have Prostate Cancer.

Mercy ScannerDuring the dark days of 8 weeks of radiation treatment, followed by chemicals, I think I had less than a week off work, on the odd day when I was so fatigued that I couldn’t function.

I arranged my radiation sessions to be around 7AM every morning so that I could go straight on to work afterwards, and still be on time. That’s how I roll.

I am now fortunately in remission, and my latest blood test last week showed a good result. The irony is that Cancer is fatal and there is every possibility that one day, hopefully decades away, it will kill me.

On the other hand, chances are very good that after back surgery, I will be a little sore from time to time, manageable with over the counter pain relief. Yet, for cancer I had less than a week off work and with a back injury it has now been over a year!

Mine is a common story, but one with which for the first 40 years of my working life I had no personal experience. I’d heard stories, mostly about people who allegedly don’t want to work, and enjoy living off the taxpayer’s dollar, but there are so many more people like me, who desperately want to work and contribute to society. If you have a look at my profile on LinkedIn you will read that my goal in life has always been to help people.

I consider my work important, a contribution to reducing the pain of traveling on our ever more congested road network by offering information about planned and unplanned events, about expected delays, alternative routes, alternate modes of transport, helping people plan for holiday road trips and much more.

I lead a team of awesome people who really care about you, their customers. It matters to me, but I’m being kept from it.

It’s funny, we talk about the cost to society of people who are needlessly killed on our roads. The cost takes into consideration the contribution they will make to the country’s GDP over their lives. Yet, the cost to taxpayers to get me back to work by providing me with back surgery, is far less than the cost of keeping me away from work.

As I said, mine is a common story, but it’s not one that people like you and I can easily relate to, unless we are directly affected.

Of course, in each instance, it’s not just the patient, it’s our partners, our family, our friends, our colleagues and of course the workload that must be done by someone else, or perhaps not at all.

seatI’ll try to make the story interesting, maybe even have the odd laugh. But let me tell you, this is no joke. I have gone from being super positive and highly motivated, with a bucket list of things I want to do which I prepared when I found out I have cancer, to being virtually trapped in my home, on the border of depression, not being able to stand, sit or lie down for any length of time without significant pain.

I’ll share an email I sent to ACC after having read a report prepared for them by a specialist, who said that “The patient appears to be doing reasonably well”.

Interestingly, this person who was paid by ACC to investigate my case did not once speak to myself, my GP, my Orthopedic Specialist, my Case Manager, my Pain Manager or my Physio.

I guess ‘reasonably well’ is a relative expression. I’m not dying.

The email is quite personal, but that’s really the point. I am a person.

Anyway, that’s it for now. I’m hoping to hear back from the hospital today and am getting on with other things in the meantime.

You may find my story interesting; you may be in a similar situation yourself. I know I’m not alone. I understand it was stated in Parliament Question Time last week that over the number of elective surgeries completed last year was 10,000 ‘elective’ surgeries less than the year before. Reasons included strikes and funding. It’s little wonder it could take months for me to just be able to speak to someone.

Feel free to comment or ask questions. I know I’m not alone here and you may be in a similar situation to mine. I grew up as a fan of New Zealand’s welfare state. I learned that we are the system and that if we don’t stand up for something, no one else will either. I just didn’t know how bad it was.

So, you there. Have you had any experiences like mine? How do you get some action without ruffling people’s feathers and having your manila folder dropped down the list a little? Of course, that wouldn’t happen would it?

I welcome your comments.

 

 

 

 

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Thinking About the Consequences of our Education System, Bullying, our Health System, Coach Azul, Cameron Harold and FREE Publicity


I listen to a lot of podcasts. I was listening to them while commuting to and from work. Then last year I suffered a back injury and I have been waiting at home, consuming pain medications and exercising for what seems like forever, for ACC to approve spinal fusion and a discectomy so that I can get back to work.

Around a week ago they notified me that they are not going to pay for the surgery on the basis that I have degeneration in my discs that was not caused by the injury. It ‘rendered them symptomatic’ and I am now waiting for an appointment with the Waitemata District Health Board, whilst working on a review claim with ACC, New Zealand’s Government Accident and Injury insurer, who I feel could have had me back at work 6 months ago. They are still covering me for the back strain, but my specialist has said that they have tried everything bar surgery. “We’ve painted ourselves into a corner” he said.

I’m told that the North Shore Hospital spine surgeon is fantastic, but they also told me they have to legally see me within 4 months. In other words, just because it says “urgent’ on your case file, doesn’t mean you will even get to speak to someone anytime soon.

So I’ve had a lot more time to listen to podcasts while exercising, strengthening my core, whilst awaiting the needed surgery I still need, so I can return to work. I suspect there are thousands of people like me, numbers that get recycled in meetings focused on saving money. Ironically, when I work I am saving citizens much more money, but I digress.

One of the podcasts I enjoy is from Azul Terronez called Born to Write. If you follow me, you know I am passionate about writing and storytelling as a means of sharing a message on my various blogs and books.

The latest podcast from Coach Azul really resonated with me. The guest was Cameron Harold, a writer, entrepreneur, business mentor and founder of the COO Alliance.

He talked about some struggles he had growing up when he was told that he was  not academically in the top 40% of students and how he battled in his mind with that through school and university.

His story to becoming an entrepreneur resonated with me but from a different perspective, particularly the education part. It fascinates me how education systems seem to fail at both ends of the spectrum, contrasting with today’s apparent dumbing down of some generations whist the skill levels that create our greatest achievements are held back, limited to those who often achieve despite the system, rather than by its design.

I was one of those kids who didn’t fit in school, particularly once I got to high school. This was not because I wasn’t in the top 40%, but because I was in the top 2%. I’m starting to write about it, but not at this stage for publication.

I used my smarts to survive in a school (being a good guitarist helped) where the height of success was failing exams and getting into the school rugby 1st 15. In my school an A+ meant getting bullied for showing up the other kids. We had streaming, but being in the ‘Ac 1’ class also put a target on the back of your head.

Even teachers who tried to encourage kids to do well were on occasion beaten up and thrown down stairwells because the kids they tried to help were embarrassed in front of their peers. I liked sport (I played in previous schools, hockey and club soccer when living in Holland) but the thought of having to stay at school a minute longer than I had to (for training) was anathema.

The podcast I listened to this morning was about getting FREE publicity. I learned similar lessons to Cameron Harold early in my career, when I was racing landyachts as a hobby sport, and I was looking for sponsorship to send a team from New Zealand to the USA.

90 Mile Beach

Me on my Class 5 Winger on 90 Mile Beach

I needed publicity to attract sponsors for a sport where one minute you see the yachts racing over the sand on a long beach or on the tarmac of an air base; and for the next half an hour or so, you sit there waiting to see them briefly again as they would fly around a mark, crashing into each other on 2 wheels. It was a great spectator sport for about 4 minutes of each race that could take up to an hour and a half.

I did two things. I got a well worn small book from the library. I don’t recall what it was called but it may as well have been called “Get the coverage you want by giving the media what they want”.

One of the things it said to do was to ask them what they wanted. That seemed to simple but I did it. I rang radio sports journalists, I rang TV, I rang magazine editors and I rang newspaper sports writers. I introduced myself and gave a quick pitch of why I was ringing, explaining the challenges of a fast exhilarating sport, with yachts on wheels doing over 100 kph on the beach that no one had heard of.

Next thing I found myself in the newsroom of the New Zealand national daily, speaking with the Sports Editor. End result, they got some great stories, we got global TV coverage, we got international magazines and radio stories, we got sponsors and our team (unfortunately I had to pull out at the last minute) went to the Nevada Desert and won the America’s Cup of Land Yachting! And I learned how to get more than my fair share of media coverage for my employers and my modest entrepreneurial ventures.

Ironically listening to Cameron’s story, and despite being very gifted intellectually, I didn’t do any university study until much later in life, because I spent many of those teenage years rebelling against a system that had no place for bright people. I’ve had a pretty exciting life so far and I feel I have made a strong contribution in my endeavours, but I also wonder if I didn’t live in the land of Tall Poppy Syndrome, how much more I could have achieved if the education system had acted on what they discovered about me and nurtured it.

Which sort of brings me back full circle to my ailing back. I have now sat down too long writing this and need to do some stretches and exercise as I wait for my number to be called by the Waitemata District Health Board for my first specialist meeting, so I can have my surgery and get back to my job. When you’re a number in the system, a few pages in a manilla folder, you are equally invisible if you want to work and be productive as someone who will quite happily live on a benefit.

Does any of this resonate with you?

 

Sensory Deprivation Float Experience in 1987


FC9This was my second ever float and I want to warn you that unless you really want to know more about the floating experience, my personal one, click on one of the word cloud buttons in my blog and find something that is more relevant to your interests.

When I first started floating back in 1987 it was something quite new. I was sales and marketing manager for a company that was very successful, but being embezzled by its CEO which was apparently a recidist pattern for him, but one I didn’t find out about until after it had cost me and some of my colleagues a lot of money and stress. I won’t mention the company, some of you will know the story. It’s really just to say that I was working really hard, bringing in some amazing 6 figure sales, and stressed, partly because at the time I knew something wasn’t koshur but I didn’t know what. I do wish some of the people who knew the past history of this criminal had warned me, because I would never have accepted the job and would probably have followed the career path opportunity to Santa Clara that stood before me.

So I go from there to the following experience, which is pretty long and unexpurgated. It’s basically my journal and pretty geeky. So here goes:

“I don’t know at this stage if there is any relevance or not, but shortly after my first float I felt a sensation in the region of the right-front part of my brain. I have felt it several times since, almost as if another sense is trying to find its way out. It has no other manifestation other than a slightly happy feeling accompanying it, which may be psychosomatic. It feels related to and yet isolated from the optical nerves.

Today, (Sunday) I had my second float, one and a half weeks after my first. I did not feel as stressed, although I did feel a need for an aid to relax. I was also keen to follow through on the principles of floating which I had started reading about. There was a force driving me to write down my experiences. A sense that something good was going to eventuate from this, far more than just relaxation.

The last week has been very tiring. Thursday was marred by arguments with the CEO and other stress-inducing problems. In the afternoon I left Auckland and drove to Palmerston North (About 350 miles). The Sales Engineer and I finished setting up a demo at the hotel we were staying in at 11:30PM.

The demonstration did not finish until after 4PM the following day, which was followed by further arguments with the CEO. It basically came down to, I was bringing in cheques from clients for 6 figure sums of money. They were being deposited somewhere and I was being told the clients hadn’t paid and to chase them for the money I had already handed in. I had never experienced a con artist like this and this being one of my greatest values, I really didn’t know how to handle it.

By 8:30PM, I was exhausted, driving back home I was starting to drift to the wrong side of the road. I decided to stay overnight in Taupo. I can’t remember the last time I felt so exhausted and overemotional. I write this because it relates to my mental state when I had my second float.

So back to the float. I was much more relaxed physically and settled in very quickly.

I did not experience the same heaviness in my neck and shoulder muscles, which suggests that much of the physical effect from the first float was a release of long term muscular tension”

Note, I am pretty much copying what I wrote verbatim at the time. It’s raw and was only really written as a personal journal. It’s quite interesting reading this 32 years later. I also want to note that I was not under the influence of any drugs of any kind.

“The muscles that felt tired and were unravelling this time were those I had just used for 1,200km of driving; arm and leg muscles.

-Mental / physical disorientation. The first example was a feeling as if I had my legs crossed at the ankles. Although they weren’t crossed (I checked), my senses were convinced that they were.

An ex-client once lost a hand in a chainsaw accident. For months afterward he felt pain in the fingers of a hand that no longer existed. (AKA Phantom Limbs)

I had a similar manifestation on several occasions that I was clenching my fists. Again I knew that my hands were open and relaxed (in the yoga nidra position, palms up). It was not just a feeling that my fists were clenched, my sense of touch had no doubt at all. However, I raised my hands, they were as I knew, open and relaxed.

I passed into and through the REM state much more quickly than in the first occasion. I find the REM state enjoyable and relaxing even if my eyes seem to be going to town.

I finally reached a point where my mind and senses were totally blank. This must be very similar to the point people seek with meditation. It was a sense of being nothing, or an infinitesimal body in a black void and being totally relaxed and comfortable with it.

I believe that this period lasted for only a fraction of a second, although it appeared to be a long time. As soon as I realised I was in this state, I snapped back to reality.

I have noticed a tendency, which makes me feel a little cautious, possibly stopping me from achieving total relaxation, in that my respiration rate is reduced to a mere fraction of normal, and there are in fact periods where I do not breathe at all, at least in comparison to my normal conscious state. The breaths are so far apart that when they come, they distract me.

I also noticed that after the first float, for 1 or 2 days, my time sense seemed altered. For example the time period between light changes at traffic signals seemed much longer, although intellectually I knew this was not so. (Weed smokers will probably relate to this, but I promise, I was totally straight).

Other than that there is little to remark upon. The second float was understandably a little anticlimactic and the endorphin level much lower than it was previously. I was advised by the manager to expect changes over the next few days.

Meanwhile, my driving muscles are feeling sore and I do not feel the same sense of euphoric confidence as I did the first time.”

I think like most experiences, the first is often the most moving. Reading back through this, it is probably very boring, but being a geek, I was trying to analyse the experience, as well as enjoy it. There were in fact physiological and psychological ongoing benefits from this which I will write about in my next blog.

As I have said previously, these blogs are personal and I share them in case they are of interest to someone and to remind me of previous times. If you haven’t floated before, or you want to get more out of your experience, I also recommend keeping a journal.

If it sparks your interest, go and visit Float Culture and tell them that my blog vaught your interest and Luigi sent you. If you are not in Auckland, just Google float tank and I’m sure you will find one reasonably close by. Anton, the owner of Float Culture told me that there are now 19 places in New Zealand where you can ‘float’. I’m sure that is a record and shows that there is real benefit from this experience.

 

 

 

I’m in Remission, New Song for Cancer Album and Relay For Life


What a week I had last week, back to work blues, PSA blood tests for my prostate cancer and the usual agonising wait for yesterday’s meeting with my oncologist after my blood tests on Wednesday and more.

Benji RoomSo the visit was short and sweet, my PSA levels have gone down a little, without the help of any more drugs and after prodding my stomach (not quite sure why and I didn’t ask) I don’t have to go back for another 3 months.

That’s a weight off my mind and I can refocus on getting on with life and I have so much I want to do.

First, there’s Relay For Life on 10-11 March. Team Early Birds is back for another year and I need your help. Our team is a little smaller than in previous years and if you would like to join us, we would love your company. You can get all the detail here.

iPhone 145If you can’t join us, it would be great if you could leave a little donation. Even $5 is tax deductible and it is an awesome cause. With one in three Kiwis getting cancer, anything we can do to aid research and the awesome work of the Auckland Cancer Society who have been a huge help to me, is welcome. Last year I raised $1,500. So far this year I haven’t got to $50. So either way, can you lend a hand?

My Big Project A Cancer Video EP, the Last Song

EarlyAs you may recall, dear reader, I am working on a HAG project which is huge, creating an EP and video series for people with cancer and those who are supporting friends and family with cancer in some way to help them on their journey. If you missed that story, details are here and again I need help.

The last song is called Dare to Dream and after the good news again on Saturday, it seems the right time to share the story and lyrics with you. This song is intimidating to me because it has tracks that I can’t play including a sax and a gospel choir. I have no idea where to find either of these, but I am confident that with some help from my friends, I will.

The song is about being told I’m in remission and trying to process what that means. I used to think that being in remission means that you are cancer free, but when I asked Benji, my oncologist about that he said “You will never be cancer free. Once you have cancer, you have cancer. Remission means it is in control and you don’t need any treatment, for now.”

IMG_2153So for the foreseeable future I will be stressed out on the last week of each 3 month period and hopefully like yesterday, will be told the good news that I continue to be doing fine. Benji thought I was looking very well and looking back at photos of my pasty pale face of a couple of years ago when I was undergoing radiation treatment and dealing with chronic fatigue, I look great!

So if you’re still with me, here are the song lyrics. Super Better is an awesome book by Jane McGonigal which now has a game and a Facebook page. There is also a great TED Talk by her for those who don’t want to wade through the book.

Verse 1
I’m in remission, it’s a reprieve from my condition

In 3 months I’ll know more, for sure

Pinch me am I dreaming? Please explain the meaning

Before I close the door, does this mean I’m cancer free?
Chorus 1

The winter sun is crisp and clear,

I’ll write a list for 10 more years

Of things I want to do and see,

Things that mean the world and

Dare to dream, dare to dream

So much more for you and me

So much more that we can be

Verse 2
I’m in remission and I give myself permission

To embrace each new day as if the cancer has gone away

I’m going to grab a power up a SuperBetter lift up

Cause there are many on our team

Who need to dear to dream.
Chorus 2 (gospel choir for alternate lines)

Dear to dream

Watch me lift my hands up high

Dear to dream

Reaching out to touch the sky

Dare to dream

Take off like a bird and fly

Can’t believe this feeling

Repeats after break with lead guitar and horn section

songSo there you have it. I’m currently working on the demo for my second song called Who Stole My Words, which is about an incident where the chronic fatigue brain fog meant I couldn’t come up with simple words like current and channel to explain how I found myself upside down in an ocean kayak, without any fight or flight instinct because I wasn’t producing cortisol or adrenaline. I was upside down, underwater harnessed in thinking ‘this is interesting’. Anyway, I’m having a bit of a struggle going from fingerpicking to strumming and staying in perfect time with the clicktrack so I can add a walking bassline. But that’s another story.

So, can you help with Relay For Life, either with a small donation, or joining the team for 10-11 March in Mairangi Bay at the Millenium Institute? I’ll be there all night relaying with family and friends to raise money for the Cancer Society and in honor of the friends, family and colleagues who are fighting or who have lost their battle with cancer.

Do you know an Auckland based Gospel choir or a small horn section, or at least a sax player who could help with this song? The album will be Not For Profit by the way. I know I will have to pay for some of the work, which I will crowd source, but the end product will be free.

Mercy ScannerWant more info on my cancer journey? You’ll find it here. If you know anyone else who might find this interesting, please share it with them with my thanks.

Life List #5 Go to Hawaii and see Lava from an Active Volcano


If you have been following my recent posts you will know that I have decided to set up 150 values based activities or experiences to achieve in the next 5 years, having been told that I am now in remission from cancer.

White1smI have always been fascinated by lava. Living in New Zealand, I have been to White Island and experienced sulphur plumes, seen active crater lakes and live a few kilometers from Rangitoto Island, a dormant volcano in Auckland. I’ve seen bubbling mud and enjoyed geothermal hot pools, but I have never seen actual lava pouring down a volcano.

So Life List #5 is to go to Hawaii and experience this from a helicopter or whatever safe way we can get to see the fire coming out of the belly of the earth. of course while there, we can also get to experience another part of island life, Pearl Harbor and other aspects of the islands.

This is Intimidating! I Need Help! A Cancer Journey EP/Video to Help Others Sounded Easy.


IMG_2256

The entrance to the radiation therapy room at Mercy Hospital, the start of my days for 8 weeks

Do you know anyone with cancer, depression or other debilitating conditions? Do you suffer yourself? Perhaps, like me you have a health condition yourself; and like me want to create something positive out of it, including coping strategies and fighting to find yourself back.

Would you like to be part of something that resonates with your values and help support me on this HAG (Hairy Audacious Goal)?

Yesterday I posted about Item #2 of 150 on my Life List inspired by Danny Dover author of the Minimalist Mindset, other books I have read like The Happiness Trap, podcasts like The Hidden Why by Leigh Martinuzzi, people I saw on TV programs like The Voice who had been on much tougher journeys than me and dared to dream of achieving lofty goals during the time I have been on my prostate cancer journey.

With the help of some good friends and family, some also still suffering from cancer I dragged myself out of feeling sorry for myself and decided that number #2 on my 150 long Life List of values based activities would be to created an EP and Video set of songs that were part of my catharsys and development, such that it will resonate with and help other cancer sufferers and their friends, family and support network.

I’m wondering if I have created a monster. How will I achieve this and 149 other things to boot, let alone find the energy for it, without detracting from my day job, which I can’t financially do without (and am passionate about)? How will I achieve this when I still frequently have to be woken up in the evening after my day at the office?

The answer, which is the same one as my cancer journey is that I can’t do it alone. In order to help other people, I need help from a team of people with a rich source of experience and some that can help with less specialist areas of support. Everything from project planners, musicians, vocalists, videographers to sound engineers, artists, production, social media, marketing and crowdfunding. Are you one of those?

I also just need supporters who can help spread the word, connect with members of the team, make cups of tea (or Texas Honey), run around after us and keep us on track and provide emotional support. We’ll need studio’s, technology, sound gear, meeting space, This is a pay it back or pay it forward exercise and should be a lot of fun.

Just since yesterday, I have already had firm offers of help from people, which is awesome and I will take them up on it. I’m going to need a pretty big team with a wide range of skills and it’s a labour of love, a not for profit venture.

Check out this short video with Danny Dover and see if it resonates with you. Is your life meaningful? For some of us it takes a reminder of our mortality and human condition to force change. Then you have to do something about it. You might like to take a similar journey and if you do, some elements may overlap. I’d love it to be this one.

So, this morning I started documenting what I am going to have to do in order to achieve this goal and it is huge. It could almost be a full time job in itself, which  is intimidating, but if I can find plenty of experts in different fields who will support me and donate time and energy; and find funds for the parts that I have to pay for, I’m going to make this happen. I’ve done it before with The Wireless Forum, Glenfield Music Centre, parents committees, sport club committees, Auckland ICT, SMEI International and more, all while keeping down a job. Anyway:

This is what I came up with for starters and it’s by no means complete:

Plan for Cancer Music EP / Video Project

  1. Concept Document and elevator pitch
  2. What help do I need at each phase of the project
    1. How can I even do it while keeping my job and energy?
    2. Project Manager
  3. People or organisations that can help me
    1. People who have raised their hands
    2. Influencers
    3. People I would like to approach for help
    4. Mentors
  4. Finance
    1. How much do I need?
    2. Where do I get it from?
  5. The songs
    1. Finish them
    2. Practice them
    3. Write a story about each one
  6. What do I need for each song
    1. Record basic demos
    2. Identify the sounds I want for each song
    3. What instruments / vocals do I want for them
    4. Find artists
    5. Find a producer
    6. Find a studio
      1. Engineer
      2. Mastering
    7. Record in conjunction with videos
    8. Video the entire process, not just the songs
  7. The video/s
    1. What is the story for the whole production
    2. What is the story for each song
    3. Find a videographer
    4. Write each song story
    5. Find an editor
    6. Production team
  8. Presentation
  9. Publishing
  10. Marketing
    1. Facebook Page
    2. Promo/merchandise
    3. Raising awareness
  11. Launch event and concert gifting the outcome to the Cancer Society
    1. How would they use or benefit from it?
    2. How will it reach patients and their supporters?
    3. How will it endure

Want to be on the team?

Life List #2 Record an EP and Video of my Songs about my Cancer Journey


I know you are a caring person wanting to make a difference like me, or you wouldn’t be reading this blog. I’m looking for advice and assistance on this project and I want to gift the results to the Cancer Society so that many people can benefit from it.

Music is a great healer and I used it as one of the tools that helped me and continues to help me through my journey. When I first was told “You Have Cancer” and got past the initial shock, I watched shows like The Voice and saw the stories of people who had turned horrific times in their lives to good purpose, wondering what did it take for me to do something positive and values driven.

IMG_2082

Where we leave our clothes when we go in for radiation treatment

I decided I wanted to do something too, which started with setting up the Facebook page Musicians with Cancer and other Maladies, I also wanted to try to do something really positive for other cancer patients and their families and friends.

 

So my Life List goal #2 is to complete an EP and music videos to help tell the story of my journey in terms of a cancer patient that may help other people relate to this horrible illness.

It’s 24/7, it’s scary and in many cases results in anguish, fear, depression, pain and death. The story isn’t unique, it applies to other conditions too like dementia.

Last night I watched the movie ‘Glen Campbell I’ll Be Me’ on TV and had tears in my eyes throughout the whole movie and my heart goes out to people suffering from dementia, which our family is also dealing with.

One of my songs for the EP is called “Who Stole My Words” which was about an experience I wrote about recently about falling out of an ocean kayak and due to my condition wasn’t able to come up with simple words like current and tide after I swam it to shore, not having the strength to get back in because I am not producing cortisol (i.e. no adrenalin). For a wordsmith, not being able to recall simple words is pretty scary.

So my challenge is that I need to fund this work and then make it available at no cost to people who are going through the same experience, because even with insurance, having cancer is very expensive and many people have to sell their homes or spend their life saving to help pay for their treatment or even to travel for treatment if they don’t live in a town where it is available. We had to spend a 5 figure sum to top up the gap for my treatment to date, so I know what it’s like. So I’d like to gift the album / video to the Cancer Society when it is complete.

I’m going to need additional musicians, possibly a backing choir for one of the songs, a videographer, editor and more people to help me. I’m going to need a studio, a sound engineer, a cast of several people and then there’s production and distribution. It’s pretty scary.

I’m keen for advice and help. First of all, where do I go for money? I’m thinking about whether to use New Zealand’s ‘Give a Little’ service. To raise funds because this is a charitable exercise. The finished product will be gifted to the Cancer Society and anyone who can benefit from it for free. There won’t be any profits.

Then I need a bit of a team to help me make this happen. Can you help with advice, or would you like to join the team? I can write the songs and I want to perform them with various artists, but that’s about the limit of my expertise.

So will you help? I need people and I need advice. You can contact me via Twitter Facebook by joining the group Musicians with Cancer and other Maladies, LinkedIn or Email.